It's come back - :(

[Jess83]

Hi All,
It's been a long time since I have posted.
Life has been cruising along for the past 6 years, running around after a energetic 6 year old, working and just enjoying life.
And now it's all come to a crashing halt again because after almost 8 years, my cancer has come back.
What we thought would most likely be a hemorrhoid has actually turned out to be a cancerous 35mm growth right next to my original TEMS resection.
They scariest part is I had a clean scope in August 2019.
So I'm now on the roller-coaster of tests and meeting, working out a treatment plan.
They are thinking I have lymph node involvement so most likely at Stage 3.
Met my radiologist on Friday and will meet my oncologist on Monday.
Just hoping some of you might be able to provide some advice on what kind of questions I should be asking my treatment team?
Is there anything you know now that you wish you have know when you started treatment?
Trying to be positive but I am crapping my past!!!!
Appreciate any help you can offer

[DarknessEmbraced]

I'm so very sorry your cancer is back and I hope you get more information soon.*hugs*

[stu]

So sorry to hear that . Such a long time however it still sounds as though this is treatable. I wish you did not have to go through it . I hated when my mum hit such bumps on the road but it lead to good outcomes and many good years ahead .
I wish the same for you .
Stu

[boxhill]

Well, that stinks. Of course, there have been a lot of advances since your first bout. Genetics, for one. Has your tumor been biopsied yet?

It sounds like you may be in for chemo this time, but can you have TEMS again?

[Jess83]

Thanks for the replies.
We had our appointment with the oncologist and surgeon yesterday and unfortunately the news was not what we hoped. I now have a met on my adrenal gland. They didn’t see it on the original CAT scan as it’s an unusual place for spread in rectal cancer.
So I’m now joining the Stage 4 club - bugger!!!!
They are still really confident that as it’s a single met they can deal with it and cure me, but I think I’m in for a rough few months.
I’m starting FOLFOX on the 29/12 - any tips?

[kandj]

I am so sorry you have had to join the shitty Stage 4 group. My DH has also has a met on his adrenal gland. There are a few others here. His has been a pin to deal with. I highly suggest having it taken out surgically if that is an option for you. DH had his treated with ablation, that had to be stopped early due to irregular EKG readings. Then it came back, so he had radiation done on it. So far so good with that one. Had he not had several surgeries before hand I think they would have surgically removed it. I am sure lots of others will chime on on FOLFOX. It can be a rough go. I have only been on the caregiver side of things.

[Claudine]

My husband also had an adrenal met (left). After 18 rounds of Folfiri and Avastin, which shrank it by half, he had laparoscopic adrenalectomy last February. The surgeon was very happy, able to remove the whole thing cleanly. Recovery was quite smooth. Definitely something to look into!

[Claudine]

Here’s a link to the post I created about adrenal mets

viewtopic.php?f=1&t=63970&hilit=Adrenal

[Nor Cal]

I’m starting FOLFOX on the 29/12 - any tips?

I've been on FOLFOXIRI so not exactly the same, but the oxi is the hard one for me. You may want some gloves handy for reaching into the fridge for a couple days post chemo. If you're going home with the 5-FU party ball, make sure you shower day of chemo because you won't have the chance for a couple of days once you're hooked up. And if your taste buds start to go sour, I'd avoid you favorite foods as the chemo may ruin them for you. Oh, and you'll probably want over the counter meds ready for bowel issues.

The neuropathy is obviously the big worry, but I've found that exercising my fingers and toes regularly really helps.

[Jess83]

Well, that stinks. Of course, there have been a lot of advances since your first bout. Genetics, for one. Has your tumor been biopsied yet?

It sounds like you may be in for chemo this time, but can you have TEMS again?

Thanks boxhill. Yes, they have checked for genetics last time as my grandmother had 3 bouts of bowel can starting in her 40’s. Out of her 8 siblings, 3 also had bowel cancer. They found a mutation on the MHY gene, but it wasn’t one of the usual mutation they associate with that condition. They said it was unknown if this was the factor causing my polyps. This was back in 2013.

I’m definitely in for chemo now, but surgeon has said I will have to lose my rectum - I’m ok with that, he keeps trying to kill me so I don’t think we should be friends anymore

[Jess83]

My husband also had an adrenal met (left). After 18 rounds of Folfiri and Avastin, which shrank it by half, he had laparoscopic adrenalectomy last February. The surgeon was very happy, able to remove the whole thing cleanly. Recovery was quite smooth. Definitely something to look into!

Thanks so much Claudine! The link was very helpful! Hoping to hear back from my surgeon today with the official plan of action, the plan is to shrink it and remove it but they were trying to work out the best order to do things.

Has he noticed any changes due to its removal?
I was suffering from terrible anxiety for the past 6 months and was wondering if the tumor might have had something to do with it?

[Jess83]

I am so sorry you have had to join the shitty Stage 4 group. My DH has also has a met on his adrenal gland. There are a few others here. His has been a pin to deal with. I highly suggest having it taken out surgically if that is an option for you. DH had his treated with ablation, that had to be stopped early due to irregular EKG readings. Then it came back, so he had radiation done on it. So far so good with that one. Had he not had several surgeries before hand I think they would have surgically removed it. I am sure lots of others will chime on on FOLFOX. It can be a rough go. I have only been on the caregiver side of things.

Thanks Kandj. I did wonder about radiation for it, but hadn’t really had a chance to ask yet. They said they will definitely be taking it out, we just don’t know at which point.
Not looking forward to chemo, very worried about the side effects, but have my fingers crossed I can get through it reasonably.

[Claudine]

Has he noticed any changes due to its removal?
I was suffering from terrible anxiety for the past 6 months and was wondering if the tumor might have had something to do with it?

No, I don’t think so - from what we’ve been told, one adrenal gland is enough, that’s a good thing there’s redundancy in our system! Yet thinking about it, before we knew about the met, he wasn’t feeling very good. Could have been chemo (he was on Xelox, which didn’t work, since the met grew while he was being treated), but could also have been related to the impaired adrenal gland.
In his case, radiation was rejected because of the risk of “friendly fire” - if I remember well, he had a loop of intestines very close to the met.

[Jess83]

I’m starting FOLFOX on the 29/12 - any tips?

I've been on FOLFOXIRI so not exactly the same, but the oxi is the hard one for me. You may want some gloves handy for reaching into the fridge for a couple days post chemo. If you're going home with the 5-FU party ball, make sure you shower day of chemo because you won't have the chance for a couple of days once you're hooked up. And if your taste buds start to go sour, I'd avoid you favorite foods as the chemo may ruin them for you. Oh, and you'll probably want over the counter meds ready for bowel issues.

The neuropathy is obviously the big worry, but I've found that exercising my fingers and toes regularly really helps.

Yep, the neuropathy is what is probably scaring me the most.

My treatment situation is rapidly changing, I may now be going straight to surgery to get the adrenal tumor removed. Speaking to another surgeon tomorrow. They are hoping that it may be a benign tumor unrelated to my primary. Fingers crossed!

What a rollercoaster 8 days it has been, but they are trying so hard to get me a plan before Xmas. Feel like I’m in good hands

[waw4]

Unless I missed it, you may want to discuss having a port implanted near a collarbone for the infusions as they can be hard on the veins.

I had 9 rounds of FolFox via a port in 2010 for Stage 3 and still have neuropathy in my feet and find it harder and more uncomfortable to walk and must always wear socks inside and shoes/sandals outside.

12 rounds is the standard course of FolFox treatment, but there was at least 1 study back then whose result showed 9 rounds was as effective as 12, so you may want to discuss this with your oncologist. I chose 9 to try and minimize my neuropathy risk.

-Bill